PEG for LIFE

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Comments

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    What's in a Name?

    I'm one of the odd ones that names "things". My truck is the "Silver Bulldog", my guitar is "Marti", my mandolin is "Blossom". I have nicknames for people who mean something to me. Marcia is my "Chiquita" and then there's "Little G", "Cha Cha", "Blue Eyes" and "Mermaid".... ladies whom I've remained friends with through the years. My cat recognizes "Booger" as much as he does "Socrates" ~lol~ 

    However, I've not named my PEG. I despise the thing. It smells and has always been slightly uncomfortable. Admittingly, I needed it the first four weeks post treatment and probably should have had it weeks sooner. I haven't used it for hydration or nutrition since Memorial Day weekend so it's just an additional appendege that needs attention and cleanings on a daily basis. I'm having it removed August 6th when I see my RO. I'm looking forward to not having that nasty thing coming out of my stomach!

    At going on 10 weeks post Tx, I find I'm not progressing in the eating/swallowing department as much as I'd like. I'm getting enough nutrition and hydration but eating is "work" for lack of a better word. My jaws tire after chewing and chewing and my swallowing is a challenge as my mouth and throat are still compromised and healing. I've read too many cases where a patient ends up needing a PEG for life due to post treatment issues. Even if the current issues are resolved, there is the distinct possibility of a recurrence that would necessitate a PEG or the eventual failure of my swallowing mechanisms. Scar tissue and stricture are possibilities that would require PEG feeding should dialtions fail to work. Aspiration can cause issues that are dangerous and life threatening. I was told by my ENT that my throat is narrower due to the surgery and scar tissue. The ramifications are yet to be seen. Has it changed my voice? Will I be able to sing again? My voice is certainly not ready for a gig and I have no idea at this point if I have the range or the timbre I had previous to cancer. I have gigs booked a little over a month from now and it's becoming quite evident that I need to cancel them :( 

    The bottom line and truth is that any of us can end up with a PEG for life. I'm psychologically preparing myself for the possibility. I'm going to do what I can to prevent it from happening but it's not outside the realm of possibility. I never thought I'd suffer from heart problems or get cancer but it happened. It's something we should keep in the back of our minds and know that despite our best efforts it can happen. 

    If it does I'll cave and come up with a name befitting of a piece of plastic tubing but until then........

    Positive thoughts and prayers

    "T"

     

     

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Shells Restaurant & Seafood Pasta...

    Man Tim...., you mean no more seafood pasta at Shells with me.... Dang, sorry to hear that, but at least your still alive and kickin it...

    As you know Denny Greene is on a PEG.... I haven't heard hide nor hair... I think I tried reaching him on FaceBook as well...

    I'll give that a check....

     

    WOW..., sorry that I did that Tim...

    Apparently reading his wife's FB page Denny passed away January 5th of this year.... Another great guy..., he was a retired Major in the Air Force if memory serves me...

    Keep the fight brother...

    John

    Hi John
     
    No way my friend, I

    Hi John

     

    No way my friend, I can eat anything you can just need a few shakes in the blender and down the old tube it goes. Life has a new meaning now that I can travel again and eat anything and any where I want. See you at Shells my friend.

     

     

    John: I am at lost knowing Denny passed away, not much more to say about that.  

     

     Tim

  • Hondo
    Hondo Member Posts: 6,636 Member

    Larry

    I named my PEG tube Larry! 

    Larry

    Is it Larry PEG or PEG Larry, lol

     

    Thanks

    Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    fishmanpa said:

    What's in a Name?

    I'm one of the odd ones that names "things". My truck is the "Silver Bulldog", my guitar is "Marti", my mandolin is "Blossom". I have nicknames for people who mean something to me. Marcia is my "Chiquita" and then there's "Little G", "Cha Cha", "Blue Eyes" and "Mermaid".... ladies whom I've remained friends with through the years. My cat recognizes "Booger" as much as he does "Socrates" ~lol~ 

    However, I've not named my PEG. I despise the thing. It smells and has always been slightly uncomfortable. Admittingly, I needed it the first four weeks post treatment and probably should have had it weeks sooner. I haven't used it for hydration or nutrition since Memorial Day weekend so it's just an additional appendege that needs attention and cleanings on a daily basis. I'm having it removed August 6th when I see my RO. I'm looking forward to not having that nasty thing coming out of my stomach!

    At going on 10 weeks post Tx, I find I'm not progressing in the eating/swallowing department as much as I'd like. I'm getting enough nutrition and hydration but eating is "work" for lack of a better word. My jaws tire after chewing and chewing and my swallowing is a challenge as my mouth and throat are still compromised and healing. I've read too many cases where a patient ends up needing a PEG for life due to post treatment issues. Even if the current issues are resolved, there is the distinct possibility of a recurrence that would necessitate a PEG or the eventual failure of my swallowing mechanisms. Scar tissue and stricture are possibilities that would require PEG feeding should dialtions fail to work. Aspiration can cause issues that are dangerous and life threatening. I was told by my ENT that my throat is narrower due to the surgery and scar tissue. The ramifications are yet to be seen. Has it changed my voice? Will I be able to sing again? My voice is certainly not ready for a gig and I have no idea at this point if I have the range or the timbre I had previous to cancer. I have gigs booked a little over a month from now and it's becoming quite evident that I need to cancel them :( 

    The bottom line and truth is that any of us can end up with a PEG for life. I'm psychologically preparing myself for the possibility. I'm going to do what I can to prevent it from happening but it's not outside the realm of possibility. I never thought I'd suffer from heart problems or get cancer but it happened. It's something we should keep in the back of our minds and know that despite our best efforts it can happen. 

    If it does I'll cave and come up with a name befitting of a piece of plastic tubing but until then........

    Positive thoughts and prayers

    "T"

     

     

     

    T

    I too never dreamed I would have to deal with cancer being a vegetarian and always taking care of my body; Cancer was for the other people. But no matter how good I took care of my body I could not control the environment that I worked in for over 38 years. As my doctor asked where did you get this cancer it is rare in the US, I knew then that's just about my luck. But you know all in all it made a stronger person out of me; yes I can’t do all the things I once did. And I always need help because I am not as strong as I once was. But my mind is still the same and it wants to do things its can’t do anymore. I loved more then anything Scuba Diving, it was my life and at times I would wish I was a fish because I loved the water. Now I can even go in the water for a swim because of my PEG and tubes in the ears. So I learned to do different things, I am glad now I am not a Fish because someone like Skiffin 16 would hook me and have me for dinner.

     

    “T” don’t be offended if your voice is not the same and if you can no longer do the things you once loved to do. You are still a great guy and that is what matters the most, you can still play your guitar and still make beautiful music. So even if there is a PEG tube somewhere in the future for you just call it your song.

     

    God bless and be with you my friend in life’s journey

    Tim Hondo     

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    maybe

    i have not had a peg tube, certainly i feel it to be magic for those who struggle thru treatments and others fighting the long term side effects. 

     

    not sure what is going to happen yet when i have all my teeth pulled within the next 6 weeks. with the slow healing i have experience with having a tooth pulled is history that says healing after all removed along with scrapping of the bone to remove some necrosis is going to slow down the intake. so i am guessing i may be getting one after some time if recovery is too slow. 

    good luck with your conversations with your friend! when i have free time i will be looking for a name in case i get a tube of majic. 

     

    Nice to see your post Hondo

     

    john 

  • jim and i
    jim and i Member Posts: 1,788 Member
    Great to see you on the

    Great to see you on the board, I miss your post. Jim has not named his tube but he has accepted he will have it for life. There are several reasons, First he is a vegan and cannot get enough calories, he still has swallow issues with everything but liquids, and many things still taste bad or bland. He avoids the hunger craps by eatting on a set schedule and using the Jevity. Anything he drinks is just added calories. He is not like you when it comes to eatting in public. He will not use his PEG in anyones presence but me. Not even family. He has decided he will take living and fishing over food.

    God Bless you.

    Debbie

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    Hondo said:

    Hi Debbie

    You would know I got the bad one, my wife at night says that sometime she can hear the gas coming out of it; we told the doctor but he say its normal. I am due to get it replaced soon so hope the next one works better.

     

    Take care and God bless you both

    Tim

    Tim,
    I cal my tube PIA pain

    Tim,

    I cal my tube PIA pain in the ****!  Lol. Makes eating a breeze, i have been on Ensure 

    therapeutic nutrition since January, all medical personal say me and PIA arenpartners for life, i am still  trying to beat it and eat normal again.  Science might not be anle to fix me but God can, and so i pray and try!  Till then, i am in best physical shape of my life  and cant show it off cause of PIA, understand the name now?!  Food tastes and smells fine to me just doesnt wnt to go down, a very sweet lady at my boyfriends lake cabin heard my story and she went and bought me a food processor so i am going to be trying some new things!  Excited and cautious at same time!

     

    Pegger for life,(at least thats what they think!)

    Rachel

     

  • Hondo
    Hondo Member Posts: 6,636 Member

    Tim,
    I cal my tube PIA pain

    Tim,

    I cal my tube PIA pain in the ****!  Lol. Makes eating a breeze, i have been on Ensure 

    therapeutic nutrition since January, all medical personal say me and PIA arenpartners for life, i am still  trying to beat it and eat normal again.  Science might not be anle to fix me but God can, and so i pray and try!  Till then, i am in best physical shape of my life  and cant show it off cause of PIA, understand the name now?!  Food tastes and smells fine to me just doesnt wnt to go down, a very sweet lady at my boyfriends lake cabin heard my story and she went and bought me a food processor so i am going to be trying some new things!  Excited and cautious at same time!

     

    Pegger for life,(at least thats what they think!)

    Rachel

     

    Hi Rachel

     

     

    I know what you mean PIA, guess what you can eat what anyone else can eat just make sure your blender can blend it fine enough to go through the tube. The Nutr,Bullet has opened my world back up to me again and I can travel and go where I want to go and eat what I want to eat. Don’t forget to always pray before eating and make sure you wash the tube out.

     

    God Bless

    Tim Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    jim and i said:

    Great to see you on the

    Great to see you on the board, I miss your post. Jim has not named his tube but he has accepted he will have it for life. There are several reasons, First he is a vegan and cannot get enough calories, he still has swallow issues with everything but liquids, and many things still taste bad or bland. He avoids the hunger craps by eatting on a set schedule and using the Jevity. Anything he drinks is just added calories. He is not like you when it comes to eatting in public. He will not use his PEG in anyones presence but me. Not even family. He has decided he will take living and fishing over food.

    God Bless you.

    Debbie

    Hi Debbie

    I am with Jim on the fishing part, and John has a boat so let’s go…..I guess after showing myself to an un-number of doctors & nurses in the passed 10 years I have very little pride left. Eating with my PEG is just another way of life now and one I will live with for a long time to come I pray.

     

    God Bless

    Hondo

     

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    Hondo said:

    Hi Debbie

    I am with Jim on the fishing part, and John has a boat so let’s go…..I guess after showing myself to an un-number of doctors & nurses in the passed 10 years I have very little pride left. Eating with my PEG is just another way of life now and one I will live with for a long time to come I pray.

     

    God Bless

    Hondo

     

     

    no worries

    I know you are an old veteran at this by now, so this may be for some noobie PEGGers. Who gives a crap what they think while you push food into your stomach to survive? It is no different than someone taking a bite a bit differently. It so disturbs me to read how intolerant people can be and just be unknowingly rude at times with these stares and double takes.

    Living here in the Bay Area, it takes ALOT for anyone to take notice of what anyone does or looks like in these parts but I suspect there are many other parts of the country where societal and cultural norms are far narrower.

    Just remember it is their expression of ignorance rather than anything to be attributed to you when you see this sort of gawking or comments. Use it as a teaching moment to get the turtles to pop their heads out into the world a bit more, will do them good! LOL don

  • katenorwood
    katenorwood Member Posts: 1,912
    hello Tim !

    As I read through all of this link I smiled.  You are truely an inspiration, as others to find the humor in what life throws at us.  You're awesome !  Katie

  • amr2662
    amr2662 Member Posts: 45 Member
    Swim

    Tim,

    As you know, I will have my tube for the rest of my life as well.  I wanted to let you know that you should be able to still swim with PEG tube.  Chlorine and salt water swimming were approved by my doctor.  Lakes and streams are out unless the tube can be covered completely watertight.  I can cover my button style tube completely with a tegaderm dressing that keeps it dry when I kayak.  If you are as active as I am you might want to look into getting a Mickey low profile or the AMT Mini-one next time you have your tube changed.  Some people claim that the low profile types have to be changed more often, but I have had 2 and each lasted over a year before I had them changed. 

    Meredith

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    amr2662 said:

    Swim

    Tim,

    As you know, I will have my tube for the rest of my life as well.  I wanted to let you know that you should be able to still swim with PEG tube.  Chlorine and salt water swimming were approved by my doctor.  Lakes and streams are out unless the tube can be covered completely watertight.  I can cover my button style tube completely with a tegaderm dressing that keeps it dry when I kayak.  If you are as active as I am you might want to look into getting a Mickey low profile or the AMT Mini-one next time you have your tube changed.  Some people claim that the low profile types have to be changed more often, but I have had 2 and each lasted over a year before I had them changed. 

    Meredith

     

    Hi Meredith

     

     

    Thanks for the advice I have an appointment next month and will ask aboutMickey low profile. I have a spare PEG tube I carry with me when traveling out side of the US it is a Mickey button type but only a 20 fret. The problem with that is I make my own food and it is too small for me to get what I eat through it. I was hopping they make them bigger and I will ask my Doc when I see him next month. I am glad to see you are getting almost a year before having to replace your PEG.I am 15 months right now on my first tube and I believe the doc is wanting to replace it when I see him. If it is OK with you please stay in touch as I can't get any advice from doctors and sometime the best advice is other who had lived it and been there.

     

    God Bless

    Tim Hondo

     

  • DarrenMoo
    DarrenMoo Member Posts: 4
    Mother struggling to deal with a life without food

    My mother had a peg put in a couple of moths ago and is really struggling with the prospect of a life without solid food,  I am  writing on her behalf because she is only getting used to computers,  she is really looking for the perspective of people who are going through the same thing as opposed to medical people who have not, she always loved her food and her cancer has nearly taken a back seat such as the profound affect this has had any advice or tips would be greatly appreciated,  her name is Anna and she is truly an amazing person.

  • phrannie51
    phrannie51 Member Posts: 4,716
    DarrenMoo said:

    Mother struggling to deal with a life without food

    My mother had a peg put in a couple of moths ago and is really struggling with the prospect of a life without solid food,  I am  writing on her behalf because she is only getting used to computers,  she is really looking for the perspective of people who are going through the same thing as opposed to medical people who have not, she always loved her food and her cancer has nearly taken a back seat such as the profound affect this has had any advice or tips would be greatly appreciated,  her name is Anna and she is truly an amazing person.

    Hi Darren....

    and welcome to this forum.  There are a few folks on here who have a PEG for life, who I'm sure you'll hear from.  This is an old thread, however....and I think if you go to the first page (go to the top of this page and click on "Head and Neck Cancer" and click on it)....it will take you back to the original page and at the top of that page right under HEAD AN NECK CANCER you'll see "Post New Forum Topic"....click that and start a new thread all your very own.

    p

  • DarrenMoo
    DarrenMoo Member Posts: 4

    Hi Darren....

    and welcome to this forum.  There are a few folks on here who have a PEG for life, who I'm sure you'll hear from.  This is an old thread, however....and I think if you go to the first page (go to the top of this page and click on "Head and Neck Cancer" and click on it)....it will take you back to the original page and at the top of that page right under HEAD AN NECK CANCER you'll see "Post New Forum Topic"....click that and start a new thread all your very own.

    p

    Thanks so much phrannie51 I

    Thanks so much phrannie51 I will do that.

     

  • sabriene
    sabriene Member Posts: 28

    Peg/Feeding Tube

    I am not sure what the difference between a Peg and Feeding Tube is but I ure wish my Husband would get his Feeding Tube back....He cannot eat or drink w/o Aspirating he has a Swallow Dr Appt Wednesday and PFT Test Pulmonary Function Test he is going to ask for a Referral to Mayo here in MN to see if there is something they can do to help him he was Diagnosed Sept 29 2009 lost his swallow right away and never got it back.  He made them take the Tube out WAY too soon, but he insited that he could eat..NOT....I am hopeful he can get int Rochester and maybe they can help him somehow as he refuses the Feeding Tube PERIOD.  Yesterday he sucked on a small piece of onion for a few minutes and he said it tasted so good..but he had to spit it out but he can suck on stuff it just does not go down and his Mucus since Surgery in May does not come up....I just feel so bad for him but he rarely complains he is happy to be alive and so far Cancer Free Scan comming up the 24th I believe then the stress and anxiety start up agin...I so wish he could put on some weight...thankfully we have 2 wonderful Son's who do the yard work and most everything to help us.  They know Dad is not strong enough to do most anything anymore...I can't do yardwork due to my back issues and neck isuues..this is NOT how I thought we would be I am 51 he is 57 these should be the years we enjoy and we do enjoy each other, just not able to Travel or do much of anything but we did go to our Cabon for the 4th of July with both boys and thier Wives and Grandson thankfully we were not alone as we had a blow out on out Trailer....our youngest was right ahead of us and saw that we pulled over and he changed the Tire as Bob would not have been able to do it and ur Son got cut real bad lot's of traffic and it's quite scarry changing a Tire on the side of an Interstate.

    Swallowing and Aspirating

    I just read what you have written concerning your spouse.  Basically, I have the same problem.  My last treatment was in 06 but never really got to where I could eat a whole lot for basically was all soft food with lots of gravy and waffles with syrup. I was like him just lucky to be alive for mind was bad stage 4.  Then in the last part of June started aspirating and all went down hill.  However, couldn't eat anything so had to make two choices.  Either the peg or stomach tube and I didn't like the last option so now back with the tube. My guess in his situation if he cannot swallow or eat items he may have to make a choice like I did.  Tell him it isn't so bad after getting use to it again.  I am very anxious to hear how it all plays out with his appointment for I just had a barium swallowing test a couple of weeks ago.  This was my second test and it still shows I am aspirating some but overall better than the first one.  So I approached the ENT about maybe having laser endoscopic to that area.  They are now doing this in some places in the United States.  The ENT called me last week and said no they felt I was not a canidate for this type of surgery.  I would like to hear what his doctor has to say about this type of surgery.  Oh, I sure hope it doesn't come that he need that feeding tube but if it does I learned something.  My surgeon got my health insurance company to pay part of the bill for the supplements food I now use in the tube and they deliver it to the house which is very nice.  What he has to watch very close now is not to get pneumonia.  By the way how are his teeth?  Will sure be glad to hear what they tell him is the best way to go with all this now. Roger